Monkey, Arm Motion, and Bruises

Junior loves his tubie monkey and it goes to all his doctors appointments. During the drive to and from the doctors offices it is always sitting in his lap. I tuck its tail under his seat belt because if somehow monkey falls off his lap Junior gets quite upset.
In the car on the way home from todays appointment I looked over to see that instead of monkey being tucked under Junior's arm where I had put him, Junior had put both his hands on his head. I just had to take a picture of course(don't worry I waited until we were sitting at a light). I know it is strange the things that touch my heart but I just thought this was so sweet. Something else that hit me is that not too long ago Junior could not have moved his arms into this position by himself. One arm maybe but both arms no way.

I have mentioned Junior's increased arm motion a little but haven't gone into it much. In the past several months we have seen some increased motion in his arms. More recently though the motion has increased more. Yesterday I even saw him use the back of his hand to swipe his mask off(pulling it to the side). My mouth dropped open, I have never seen him bring his hand to his face purposefully like that before and then actually pull something off. He will get his arm on the tubing below the mask and then pull but not all the way to his face. I had found his mask on the side of his face multiple times but could not figure out how he was getting it there. This time I caught him in the act and now I know his trick. This progress is not just big it is huge.
I am so excited and he is quite proud of himself. The therapists thinks that the progress is because he is no longer having to use all his energy just in breathing. The longer his lungs stay healthy the more physical progress we are seeing.
His increased arm movement has presented us with some challenges. The biggest one is keeping his arms safe and preventing bruises. His arm motions are big and his muscle control is minimal. He will stiffen and push his arm at something but does not have the control to stop the arm. He ends up with his arm stuck behind his chairs. When he pulls it is caught on the back of his chair or ends up caught in the little arm rest bar. It is nearly impossible to keep his hands in his lap/chair now that he has figured out how to get them to move and I am so worried he is going to get hurt.
Yesterday in the van I looked back and he had gotten his hand/arm stuck under the chest harness. (that buckle in the pic is what he got his hand caught under). With his mobility/muscle issues when he is stressed his muscles stiffen so if I hadn't caught it he could have really hurt his arm pushing it into the buckles.
We are on the lookout for ideas to keep his arms safe but not restrict his motion(at least not too much). If you have some suggestions please share. We typically keep sweat bands on his wrists for protection but that doesn't protect his elbows and the rest of his arms. I plan to see if either pool noodles or foam pipe covering will work on the sides of his shower chair but we need to figure out options for his transport stroller(the one in the pic),his wheel chair and stander.

^Emily^ is in Jesus Arms

I posted a few days ago about our sweet friend who was fighting her last earthly battle and would soon be earning her wings. This evening precious Emily flew into the arms of Jesus.
Please keep Emily's family in your prayers during this difficult and sad time. We love you Emily and will miss your contagious smile and laughter. Heaven has gained a beautiful angel.
Emily loved Hello Kitty and every time I see Hello Kitty I will think of her.

Look At Those Oxygen Levels

Junior started using the IPV on Thursday evening and since then we have seen quite a change in his oxygen levels. He has needed no daytime oxygen since that time even with some asthma issues still hanging around. Not to say he doesn't still get the excess lung secretions and won't need oxygen at times but we are very clearly seeing that it is helping him. The goal will be to be able to start backing off on other treatments such as his airway vest meaning more time for fun things.
These are the numbers I saw Sunday morning. Junior was on bipap but no oxygen, can't get better then that(heart rate is a bit high because he was stretching and waking up).
I took off his bipap and started his morning treatments. A half hour after taking off bipap, he is on room air(again high heart rate but this time from the neb treatment). Relaxing and looking out the window, Mellisa decorated it for Spring for him.
Ready to go outside

Quality of Life, MJ's Perspective

Great post written by a friend who has SMA. Quality of life is something that is frequently brought up and MJ does a great job sharing her view on this.
We have dealt with this question on many occasions. People don't seem to understand that because you are disabled doesn't mean you can't be happy and have amazing quality of life. Because my child's life is different does not mean it has less quality or value. Junior is the happiest most determined child I know and loves life with a passion that few able bodied people can even comprehend. Yet many people miss that and only see what he can't do or the struggles he has. Be sure to click the link to read the post.
http://smileshoelace.blogspot.com/2012/04/ignorance-is-bliss.html

Behind a Shoelace & a Smile: Ignorance is Bliss

smileshoelace.blogspot.com

Art Fun

Earlier this week Junior got a big surprise but things were busy and his asthma was acting up so we hadn't gotten it out.
It is a divider and each panel is made from painting canvas. Today we got it out and he thinks it is wonderful.
First he went for a ride in his lift so he could paint with his feet.
not sure why the pic makes his feet look so dark
loving the feel of his feet in the paint
The foot prints he put on the bottom of his divider
But I don't want to get out of my lift, I like putting my feet in the paint.
Ready for some more painting(you can still see those puffy allergy eyes, ready for this weather to clear up)Using beads to paint
Now to do some car/truck painting
His wheels design
Now to check out the artwork

still lots of room for more art and he also has the other side to paint. Does anyone know what I could coat this with once Junior is finished. I would love to be actually able to use this divider but don't want to rub off his artwork.
Now time to relax and watch Transformers

IPV is in the House

Yesterday I picked up the IPV and was trained in its use. A complicated looking machine but fairly simple to use. The RT tried it on Junior while he was showing me how to operate it and even without the airway medication it quickly helped him to clear a huge amount of lung congestion. Junior is not a fan of the IPV at the moment but I know he will get used to it and do great.
This machine pushes small puffs of air into the lungs which basically does percussion from the inside. It also acts to push his airway medication deep into the lungs where it is needed.
Junior has now had a few treatments and we are already seeing a difference in his oxygen levels as well as the amount of secretions he is clearing.

The first thing I had to do last night was rearrange Junior's medical cart so the IPV would fit. The cough assist is now on the bottom shelf. The IPV is the big green machine(for those not familiar with the equipment the top shelf is his airway vest and IPV, middle shelf is airway meds and bipap/avaps along with bipap supplies, bottom shelf is nebulizer and cough assist as well as a box with items for taking vitals.
IPV set up and ready for use
The mask that goes on Junior's face, the yellow cup is where the airway medication is placed
Getting a treatment, we quickly found that this mask is too large so have switched to a smaller one
All done and having his regular nebulizer treatment
Some silliness with Abby
They thought it was very funny to both wear a oxygen probe
Junior decorating eggs, it didn't get done until after Easter but Junior didn't mind. Junior thinks everything is more fun when done on his light box
His eggs. Two he painted, two are volcano eggs(thanks Dakin for the great idea), and two he put glitter on. The painted ones he placed in a small tub with marbles and koosh balls and rolled them around. his painted eggs

This picture is from Easter day. Abby was enjoying playing with the picnik picture editing program and trying different effects.

Prayers for a Princess

Today we got some very sad news. A precious little princess will soon earn her wings.
Mariah has been in the hospital for quite some time now fighting a courageous battle against an infection. The infection has become resistant to the many antibiotics and her family was forced to make the hardest decision any parent will have to make. Their beautiful girl is now home on hospice and surrounded by her loving family.
Last summer we had the privilege of meeting Mariah and her parents. Such a blessing to have been able to get to know Mariah a little bit in person and give her hugs. Truly a special little girl with a very big personality and sweet spirit. I remember laughing because she was signing "no more/go away" when she got sick of everyone taking pictures.
We love you Mariah, Caroline, and family. Our thoughts and prayers are with you during this time. May God surround you with His strength, peace, and comfort.
Today Junior helped me make a tubie princess to send to princess Mariah, even princesses can have feeding tubes.
Junior made a card for Mariah
Giving the princess tubie hugs to take to Mariah and her family

It is so hard to do another post about a sweet child who will soon gain their wings. It breaks my heart to see so many families facing the grief of saying good bye to their child.
It also reminds me that none of us are promised even one more day on this earth. Don't take one moment for granted, live and love like there is no tomorrow. Hold your kids tight and be thankful for the time you have with them, make sure they know how much you love them.

Update: 4/21/12 Mariah's mom just shared this pic of her precious girl with us today. Please continue to keep Mariah and her family in your prayers.